Facilitating clinical decision making via registry data: a case from the Finnish MD-registry

Transcription

1 Facilitating clinical decision making via registry data: a case from the Finnish MD-registry Merja Soilu-Hänninen MD, PhD, Docent Administrational Department Head Doctor General Neurology Division Head Division of Clinical Neurosciences Turku University Hospital and University of Turku 2nd Nordic Conference on Real World Data Helsinki

2 Disclosures Administrational Department Head Doctor Division of Clinical Neurosciences, Turku University Hospital Advisory Board or lecture honoraria from Astra-Tech, Bayer, Biogen, Eisai, Lundbeck, Merck, Novartis, Orion, Roche, UCB, Sanofi-Aventis, Teva Research funding: Duodecim, Maud Kuistila Foundation, Finnish MS- Foundation, Sigrid Juselius Foundation, Turku University Foundation, Bayer, Biogen, Novartis Investigator in clinical trials funded by Bayer, Biogen, Merck-Serono, Novartis, Roche, UCB, Sanofi-Aventis, Schering, Teva

3 Why an MS register is needed?

4 Revolution of MS care

5 Development of the Finnish MS Treatment Register Finnish Neurological Association assigned a steering board to develop an MS-registry in Finland in January 2011 Chair Irina Elovaara, Professor, Tampere University Hospital , Merja Soilu-Hänninen Current steering board members Laura Airas, Turku University Hospital Päivi Hartikainen, Kuopio University Hospital Pentti Tienari and Sari Atula Helsinki University Hospital Maritta Ukkonen, Tampere University Hospital Keijo Koivisto, Seinäjoki Central Hospital Juhani Ruutiainen, Director of Rehabilitation, Finnish Neuro Society Anne Remes, Johanna Kruger, Oulu University Hospital Hanna Kuusisto, Kanta-Häme Central Hospital

6 Finnish MS Treatment Register Registry software service application provided by StellarQ Internet based service accessed by use of the card provided by the Population Register Centre of Finland for registered doctors Integration with the eletronic patient files in progress Each hospital joining the register makes a contract with StellarQ and forms a closed register of their own National register data is obtained by combining anonymised data from each closed hospital registry

7 Launch of the MS register in Turku Pilot of the register technology 2013 Contract with StellarQ in January 2014 Collaboration with the Auria Biobank for data transfer into the registry 1004 confirmed CIS and MS diagnoses, comorbidity diagnoses and laboratory values transferred into the register in March 2014 Hands on training course to practise the use the registry for neurologists, residents and nurses of the neurology policlinic in August 2014

8 Hospitals using MS register in Finland 9/2017 Turku University Hospital Kuopio University Hospital Helsinki University Hospital Tampere University Hospital Oulu University Hospital Central Hospital of Central Finland (Jyväskylä) Pori Central Hospital Vaasa Central Hospital Savonlinna Central Hospital Seinäjoki Central Hospital Kanta-Häme Central Hospital (Hämeenlinna) Kotka Central hospital (EKSOTE) Lappeenranta Central Hospital (CAREA)

9 Unique features of the Finnish MS register Integration into the electronic patients files MRI findings can be brought into the register in a structured form directly from the neuroradiologist report Automatized neurological status Calculates the disability status score based on neurological examination findings MyMS patients application for obtaining patient derived outcomes and life style information

10 Patient s disease history in geographical view

11 Structured MRI

12 Fully automatized neurological status

13 Patients in the registry in the Hospital District of Southwest Finland (VSSHP) and in other hospitals who have joined the register so far VSSHP All hospitals Minimal data set= personal identification code, name, age, sex, date of MS (ICD code G35) or CIS (ICD code G37.9) diagnosis

14 Gender distribution of the patients All hospitals

15 MS subtypes in Turku University Hospital CIS

16 Age distribution National

17 Patients divided by EDSS steps Disability status data filled in from848 (61%) of patients Disability status data filled in from 2493 patients (29%) of patients

18 Immunomodulatory therapies Medication data filled in from 621 patients (874 patients visiting the clinic 2016, not all have immunotherapy)

19 Launced in Turku 9/2017: MyMS patient application

20 How does the register help in clinical decision making?

21 You can directly get acces to the information filled in by the patients themselves Testi Potilas Turku

22 Future opportunities Combining biobank data with real life clinical and patient related outcomes will allow Advanced cost-benefit analyses Development of prognostic markers for each therapy Step towards real personalized medicine Identification of patients at risk of serious side effects e.g. by genetic and biomarker profiling Identification of patients to clinical trials

23 Needs and challenges in Finland National coverage of both the register and the patient application Financial resources needed in each hospital to get the register fees into their budget Time resources needed for the clinicians for the prospective use the register Filling the complete retrospective medication and disease histories into the register is manual and time consuming Integration of the register with the electronic patient files in hospitals using different electronic patient file systems

24 Acknowlewdgements Finnish Neurological Society Finnish MS nurses association Finnish Neuro Society Finnish Funding Agency for Technology and Innovation CEO Markku Aittokallio Neurology policlinic MS team Professor Risto O. Roine Chair, Division of Clinical Neurosciences Samu Kurki, PhD Auria Biobank